The Wake

A gaunt, bald figure in a loose-fitting shirt and baggy plaid sweatpants posed in front of a camera with his new guitar. He grinned, in spite of the life-threatening tumor inside his abdomen. The tumor rotted cells throughout his body, absorbing the nutrients from his food and encasing his organs, trying to shut them down. Andrew Kippley, a 15-year-old youth from Farmington, Minnesota, had it tough for a teenager. While most teens his age dealt with high school, Andrew dealt with death itself, trying to prove he was tough enough to beat it twice.

Doctors diagnosed Andrew in May with neuroblastoma, a cancer usually found in infants. Andrew had previously beat neuroblastoma when he was two, yet his cancer resurfaced 12 years later. This time, Andrew faced a tougher battle as neuroblastoma is easier to treat in infants than young adults. His
odds grew worse when doctors at Children’s Hospital in St. Paul thought Andrew’s tumor was inoperable the first time they tried to operate on him. They put radioactive chemicals inside Andrew’s body during two rounds of chemotherapy trying to shrink the tumor while it pushed Andrew’s organs
out of place.

Andrew’s cancer wouldn’t disappear so easily. The tumor kept growing in spite of the chemo. Left with no other choice on July 29, 2008, Andrew once again underwent surgery to remove the tumor that threatened his life. For Andrew, it wasn’t about what happened if the surgery didn’t work. This was just another step to subdue his cancer. The surgery proved to be difficult; however, complications arose before the surgery started, during Andrew’s bowel preparation.

“First they gave me this [liquid], I don’t even know what it’s called, and that was completely disgusting and I couldn’t drink it,” Andrew says. “So they put in a feeding tube to pump it directly into my stomach. I threw it up through the tube, right back out of my stomach, so it was a complete loop out of my nose and out of my mouth. I didn’t like that so much.” Andrew’s difficulties got worse as the surgery began. Doctors worried over the amount of blood Andrew was losing and at one point considered stopping the surgery.

“They discussed pulling out being an option but they wanted to continue trying until it became dangerous for Andrew,” says Amber Kippley, Andrew’s mother.

They made the right decision. According to Don Kippley, Andrew’s father, the doctors told the Kippleys that Andrew’s tumor popped out of his body into the surgeon’s hands. At the time, doctors told the Kippleys they had removed about 95 percent of the tumor, later figuring they had removed about 90 percent. During the surgery, Andrew needed 21 units of blood in transfusions, or almost two adult bodies worth of blood. He stayed in the hospital’s Intensive Care Unit overnight since his blood pressure had dropped too low for safety. He didn’t wake up from the surgery until the next day.

Even though Andrew still had tumors in his tailbone and spinal column, he had a better chance to beat his cancer than he ever did before. While Andrew spent a week recovering from his surgery, his family learned about other treatments for him, since chemotherapy wasn’t working.

The Children’s Hospital of Philadelphia offered a treatment called MIBG therapy, or Metaiodo-benzylguanidine therapy. MIBG is a chemical used in scans of certain cancer patients. It is injected into the blood stream and gathers in certain types of tumors, including neuroblastoma tumors. A type of radioactive iodine, specifically I131, is combined with the MIBG to attack neuroblastoma tissue directly. Studies show it is one of the most effective treatments for patients who are treated for recurring cancer. If Andrew flew out to Philadelphia, his treatment would be monitored by Dr. John Maris, who is one of the world’s top experts in neuroblastoma. “We think that we had an opportunity to really help Andrew,” Maris says. “It is the most effective therapy we know of for patients in
relapse.”

The Kippley family agreed to the MIBG therapy, making the arrangements for Andrew and Amber to fly to Philadelphia for 12 days. Once in Philadelphia, they stayed at the Ronald McDonald house until it was time for Andrew’s MIBG therapy to begin. While there, doctors noticed a large amount of blood clotting in Andrew’s right leg, from hip to knee, something doctors in St. Paul didn’t find. This is the reason why Andrew’s legs would become “just monstrous,” during his chemotherapy rounds, Don says. After a week or so in Philadelphia, Andrew began his treatment on Aug 18, hoping to destroy his cancer for good.

Andrew spent his time at the hospital in a “typical” hospital room, as Amber described it. What’s typical for Andrew isn’t exactly typical for other hospital patients, however. The hospital rooms that MIBG therapy patients use at CHOP are covered by a one-fourth inch lead barrier, in order to prevent
radioactive contamination from spreading throughout the building. While much of the MIBG chemicals will collect in the tumor, most of the radioactive chemicals leave the body through urine, saliva, even oils off a patient’s skin. Three lead shields about three feet long surrounded Andrew’s bed, to prevent radiation from affecting anyone in the room with him. Everything in the room, including the bed, was wrapped in cellophane or plastic, according to Amber. In spite of the precautions, Andrew did much better with this treatment.

“It’s nothing like chemo,” Andrew says. “It’s not nauseating.”

Doctors placed the MIBG into two “huge” syringes, which are then placed into infusion pumps, which slowly releases the MIBG chemicals into the bloodstream through an IV. Andrew spent over two and a half hours receiving the chemicals. He then had to wait five days for the radioactivity to wear off,
staying in bed the entire time on doctor’s orders. His mother and a disposable cell phone kept him company during his five day wait. Amber had to wear a dosimeter, a device that monitors the amount of radiation a person receives, while spending time with Andrew. CHOP recommends parents who wish
to spend time with their son or daughter during MIBG treatment keep across the room from the bed their child is laying in. Of course, boredom set in quickly. At one point, mother and son threw things at each other while yelling, “contamination!” whenever somebody got hit.

Andrew left Philadelphia the day after the first round of his treatment was done, making an appointment for the next round of therapy in mid-October. He now had to visit the doctor twice a week, getting his blood counts checked each time and going through a physical once a week. If Andrew’s blood counts drop, he could face the same side effects affecting chemo patients like a weak immune system that could leave him susceptible to infections. Although it is common for an MIBG patient’s blood counts to drop during treatment, Andrew’s counts remained steady each week he’s visited the doctor since his first round of MIBG therapy.

Andrew would face a new challenge soon after his MIBG therapy. Amber was diagnosed with ovarian cancer in the beginning of September after doctors found cysts on her ovaries. In spite of this latest tragedy for the Kippleys, they reacted as they always do. Andrew began bragging his tumor was bigger
than Amber’s and Amber bet Andrew her tumor was larger. They had practice taking bad news after all Andrew had gone through and something like Amber’s cancer diagnosis wasn’t going to affect them. “If we didn’t laugh so much we’d be crying all the time,” Don says.

Amber underwent surgery two weeks later to remove her cancer. Doctors discovered the tumor was benign while removing Amber’s ovaries, ensuring she would never again contract ovarian cancer and securing Andrew’s place as the only Kippley with cancer. Andrew did his part by staying with his mom during her surgery. “It was real important to him,” Amber says. “He wanted to take care of me like I took care of him. He was little Mr. Mom.”

Therefore, Andrew was one of the first people to know he’d lost the bet between him and Amber. While Andrew’s tumor was about three pounds at the most, Amber’s tumor doubled in size within the two weeks between her diagnosis and surgery. Her tumor weighed eight pounds when doctors removed it.

“I so kicked his butt,” Amber says. “He’ll try to argue and say, ‘Well mine bled more,’ but I so kicked his butt.”

Regardless of who won the bet, Andrew’s struggle with neuroblastoma won’t go away for a long time. Doctors aren’t sure if they can ever cure Andrew’s cancer. While the MIBG therapy appears to prevent the tumor from growing, Andrew will most likely never get rid of the cancer left in his spinal column
and tail bone, which means he’ll have to find other treatments that won’t affect his body like chemo or MIBG therapy. Of course, fighting cancer costs a lot of money, especially in tough financial times. Andrew has used up over half of a $1 million insurance policy thus far battling for his life.

Having cancer has its benefits, however. During his fight so far, Andrew has had the support of his community, a strong network of friends raising money for his treatment, and a lot of funny stories to share like “prowling the streets of Farmington” at night with his dad. He’s received a brand new guitar for free and even got an autographed picture of legendary musician BB King in the mail, thanks to his music teacher Randall Ferguson. Best of all, he’s still alive. Even though the future is uncertain for Andrew, he still has a few things to look forward to: bugging his mom for driver’s education lessons.

To keep up to date on Andrew’s battle with cancer, visit www.andrewkippley.com